Purple Where You Least Expect It

More than ten years after she died, I have finally changed the way Mom's story ends.

Last week I went to Seattle to lead an all-day workshop for women with recurrent ovarian cancer. The name of the workshop was “HOPE In Three Acts,” and our goal was to help women flourish, no matter what, by helping them to shift the stories they were telling inside their head.

This was the story inside my head, that day: What if this doesn’t work?

I’ve been doing my storytelling workshops for a long time, and I always have total confidence, because the science is rock solid, and who doesn’t love a good story? But the stakes felt different here, because I wasn’t working with nonprofit organizations or health care companies or advocacy groups looking for inspiration for their work.

I was talking to women who were living through the hardest season of their lives, and I was daring to tell them we could help.

And I couldn’t help but wonder: what if we were wrong?

What if this story didn’t work?

What if this story hurt?

A Story A Long Time Coming

This project has been a long time in the works; my research partner, Megan Shen, wrote about it a few weeks ago. Megan and I met when I did a storytelling workshop for the Coalition to Transform Advanced Care, about how to change the narrative around illness. Megan, a Ph.D. in social psychology, attended the workshop and thought I wonder if this would make a clinical difference for my patients?

There were signs, all along the way, that this partnership was going to be something transformative. Perhaps the first one was when Megan submitted the initial grant application for the research; she named our series, “Project HOPE.”

To quote Megan herself, “HOPE focuses on supporting women with recurrent ovarian cancer, which is often a challenging prognosis and illness journey. It pulls from the science around the power of storytelling, coping strategies and present mindedness, and community and social support to help women cope and dare I say thrive with the right now reality of their situation. Its goal is to find ways to help women with recurrent ovarian cancer thrive, even when their circumstances may be telling them it’s not possible to thrive here.”

I read her application and I thought, oh.

And I thought, Mom.

A Story That Ended Terribly

I spent much of 2023 telling the story of the worst year of my life; the year my Mom spent dying. For thirty years, Mom was the director of a cancer center in Atlanta; her focus was on quality of life for her patients and their families. Her mission was to “Create Hope.” It was her mantra, the title of her newsletter, and the license plate on her car. She was a beacon of hope to everyone who knew her, able to craft meaning and joy and purpose out of the hardest circumstances.

Mom dedicated her life to the premise of hope and joy and love no matter what, which is why I was never able to get over the way her story ended. She lost her mind, she lost her faith, she even lost her belief that those around her loved her. She spent most of the last year of her life scared, and psychotic, and feeling alone (although she never was), and I just couldn’t bear it.

I could not bear that this was the way her story ended.

And so I took my own advice, and I changed it.

A Story That Started Over

The first workshop we did was over zoom, some weeks ago. I was anxious all day long leading up to it. I lit a purple candle, in honor of my Mom (it was her favorite color), and set it behind the computer screen, where I could watch its steady glow. The women filed in, and introduced themselves, talking about their work at a food pantry, and teaching yoga, and learning piano, and I got ready to start.

As I began to speak, explaining how stories work inside our brain, and how if we change our stories, everything changes, one of the women started to move around in her seat. She looked agitated, and finally she couldn’t help herself anymore, she waved her hand, she interrupted.

Oh God, I thought. It’s not working. I said, “Yes?”

And she said, “Can you please give this workshop to my doctor?”

I laughed, in relief, and explained, yes, in fact, we have had the same requests from providers who saw the pilot version of this workshop, and in fact have already received funding for a provider-focused version.

The zoom workshop went well, but it also felt that this next one, in person, was going to be the real test. Could we bring a group of women together, and could we create a story that would create hope?

This is what I was in Seattle last week to explore.

HOPE In Three Acts

For this workshop, we focus on telling three kinds of stories — hope in three acts. We talk about how to create a story that can help you feel strong and inspired, when you are suffering. We talk about how to craft a story that helps you find peace, joy and purpose in the midst of life’s deep uncertainty. And we close the workshop with a story about how to find meaning in grief and loss… through love.

Again, quoting the actual research scientist on our team, my partner Megan Shen:

“Our field is so centrally focused on cure at all costs that we often forget how to help the human side of our patients thrive. To find hope, joy, and love even during a hard diagnosis….We had hit on a nerve, a major need in this community. And I have seen that nerve pulse more strongly in recent years.”

As I sat in the hotel lobby a week ago today, waiting for Megan to pick me up so we could lead the day together, I wrote in my journal, using a purple pen, Mom, I hope you are here with me today, and I hope I make you proud.

Purple was Mom’s favorite color, and ever since she died, “purple in an unexpected place” has been our code. For more than ten years, when I need her, she shows up as purple — one time a dog dyed purple crossed in front of my car, another time an older woman dressed head to toe in purple danced down the street in front of me. I ask a question, and she answers it, in tones of purple.

We did the workshop, and as we introduced ourselves, I explained how I came to this work. I told the story of Betty Castellani, who started working with hope and cancer forty years ago, when no one was telling those stories. I talked about the decades of cancer survivors who shared our Thanksgiving meals and our holidays, who helped me build my house, who went to movies with us, who became our families.

This was my Mom’s story, and I told it

.

A Story With A Twist At The End

When I began this workshop, the same thing happened as had happened on Zoom; a woman raised her hand, just as we got underway, asking “Do you need to have cancer to take this workshop? Can my family take it?”

We laughed and said, yes, we are working on that too, and we spent a wonderful day together. We spoke about hope and resilience and “this is what your brain looks like on stories,” and the source of suffering, and the source of joy. We talked about epigenetics, and how the stories we tell get coded onto our DNA, and last for generations.

We spoke about the fact that no one lives forever, but then we closed with a twist, with these words.

There’s no such thing as a happy ending. Because there’s no such thing as the end.

The end of one story is also, always, the beginning of another.

The story you tell will change your life. But far beyond that… it will change ours too.

Because when you tell us a story of a time you were strong, we all remember: we can be strong, too

When you tell a story of courage, courage resonates through generations.

When you tell a love story, the love lingers long after you are gone.

No one lives forever.

But your story?

Your story will never end.

Who knows what will happen from here — with this work, with these workshops, with these women, with all of us. It is all unknown.

But I take hope from this promise, above all else.

I couldn’t stand the way Mom’s story ended.

And so I changed it.

I couldn’t stand to live in a world without hope.

So, with all kinds of friends and partners, I am still trying to create it.

Oh, and one last thing. The next morning, in my journal, I told Mom about what had happened that day, the stories we had shared, the gratitude and the joy and the energy and the love the women offered, and I said, Mom, I hope I made you proud.

That night, in my hotel room, everything was purple.